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3yr Old Negative Blood Test Results For Celiac But Severe Vitamin D Deficiency Found? Any Ideas

imagine22

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imagine22 Contributor
imagine22
Posted

I have celiac disease so I had my 3yr old tested recently (she has had the gene test in the past and does have the genes). The blood test came back negative but she has a severe vitamin D deficiency (despite being outside a lot (but with sunscreen 95% of the time - its australia!) and having particularly fair skin!)?

is this related to celiac disease? or unrelated?

She is asymptomatic apart from the fact she has gone from 50% percentil fro height from year 0-2yrs (when gluten free) and from age 2-3 has been at 20th percentile for height (she started gluten at age 2yrs with no obvious reactions).

any ideas appreciated.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Children under the age of 5 often do not show up in blood work. If you are a diagnosed celiac then the chances of her also being impacted are strong. The fact that she has dropped so much in height is significant. If you plan on her getting an endo do not make her gluten free yet, if you don't then I would get her on the diet asap.

Fimac Newbie
Fimac
Posted
I have celiac disease so I had my 3yr old tested recently (she has had the gene test in the past and does have the genes). The blood test came back negative but she has a severe vitamin D deficiency (despite being outside a lot (but with sunscreen 95% of the time - its australia!) and having particularly fair skin!)?

is this related to celiac disease? or unrelated?

She is asymptomatic apart from the fact she has gone from 50% percentil fro height from year 0-2yrs (when gluten free) and from age 2-3 has been at 20th percentile for height (she started gluten at age 2yrs with no obvious reactions).

any ideas appreciated.

Hi, my oldest son is now being tested for celiac due to a finding of low vit D. However he breaks bones and so they are looking for reasons that he is not absorbing calcium. One of his brothers is the celiac.

I think that there is an aus study that found that using lots of sunscreen has led to problems with vit D.

Sun Screen and Vitamin D

With the hot days of summer, many people use sunscreen thinking they are doing something good for themselves. Most sunscreen is designed blocks UVB sun radiation, which allows your body to create Vitamin D. Some times they do not provide the block for the UVA radiation, which is responsible for sunburn and skin cancer. When you do need a good sunscreen make sure it blocks both UVB and UVA, since both UVA and UVB cause tanning and burning.

Fiona

Mother of Jibril Enthusiast
Mother of Jibril
Posted

Nora posted a really useful link about vitamin D...

Open Original Shared Link

It convinced me to start taking a supplement! I think skin cancer is a legitimate concern when you have fair skin and live in Australia... my dad has had several basal cell cancers removed from his face. Instead of more sun, I would try giving your daughter a supplement. It wouldn't interfere with testing for celiac and could do her a lot of good while you're sorting out her other problem(s). B)

Pattymom Newbie
Pattymom
Posted

I don't know abou the vitamin d. But I have 4 year old who was gluten free until age 2. We gave her gluten, she showed no real symptoms, negative blood test. Except for the slowed growth. By the time she reached 3, it was no growth. Took a few months glutne and diary free to get her gorwing again, an it's still slow. Sigh. Now the endocrinologist wants to do lots of tests, since her bloodwork was negative. How this helps, I don't know. But I wish we had gotten the biopsy when she was still on gluten, though I a unwilling to put her back on it now since she is at least growing some. If you are already gluten free, it's not so hard, and see if her growth picks back up. That could be an easy answer.

good luck,

Patty

TK2006 Newbie
TK2006
Posted

I too have a severe vit D difficiency (though I'm 28 not 3 :) My Dr. had me tested and had claimed that no amount of sun or dairy products can make up for a lack of vit D. I've read that the lack of vit. D absorption is a symptom of gluten intolerance. Vit D also related to your mood as well, so a lack of it can create a moody streak.

spoticus Rookie
spoticus
Posted

I just had a biopsy done and it came back negative for celiac sprue but I had labs done the same day showing vit D deficiency as well. I recently started taking Vit D 2000 IU a day and will get tested again in a few months to see if it helped.

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    • trents
      is my cleiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      is my cleiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my cleiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
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      is my cleiac disease gone?

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